Founder of TTPNetwork Recognised with British Empire Medal in the King’s New Year Honours 2026

Jo McIntyre, founder of TTPNetwork, has received a British Empire Award for her charitable work in the New Year’s Honours List.

A Berkshire woman who has tirelessly supported those diagnosed with a life-threatening blood disorder has spoken of her delight at being recognised by the King with a British Empire Award in the New Year’s Honours.

When Jo McIntyre found out she was to be awarded a British Empire Medal (BEM) for her charitable work over the last 28 years, she said she was “shocked and felt really honoured.”

She added: “I want to say a huge thank you to all those patients and families, and volunteers who engage with us and offer peer support to others. I’ve now lived with Thrombotic Thrombocytopenic Purpura and worked on the network for longer than I lived without it — it’s become my life’s work.”

“It’s a difficult condition to describe, which is why connecting with people who understand matters so much.”

Jo was diagnosed with the rare and potentially life-threatening blood disorder Thrombotic Thrombocytopenic Purpura (TTP) in 1995, when she was just 24 years old.

Jo was in hospital for a month including a spell in intensive care and was told it was a one-off occurrence. However she went on to relapse another three times.

TTP occurs when the ADAMTS13 enzyme does not function as it should, leading to small blood clots in the blood vessels, low platelet counts and destruction of red blood cells.

The condition affects six to 10 people in every million, and treatment is a medical emergency that usually involves daily plasma exchange alongside medication.

After relapsing and wanting to speak to other people about her condition, Jo reached out through ‘Woman’ magazine, asking: ‘Has anyone else got this?’ She recalled: “I received just a handful of replies. From there, I grew TTPNetwork — with no money to run it — relying on donated stamps and envelopes to send out our first newsletters.”

This was 28 years ago, and the network is still going.

One of Jo’s initial aims was to reach people who had received treatment in the past but were not aware that they could relapse. In fact, 30-50% of patients will relapse after their initial diagnosis.

She said: “I also didn’t want people to feel lonely or isolated. We run webinars, produce information leaflets, and represent the patient voice in commissioning and at NICE. But fundamentally, it’s about peer support.”

Over the decades, Jo formed strong relationships with doctors in the field and has become a patient advocate. She was involved as the patient voice on setting up a national set of guidelines for treating TTP. That evolved into NHS England commissioning nine specialist treatment centres in England; Jo was on the commissioning panel along with another patient volunteer, helping to assess the bids.

In 2021, as TTPNetwork continued to grow, Jo registered it as a charity and is now Charity Director. This isn’t her first charity venture – in 2011, after working for her local authority as a domestic abuse reduction coordinator, Jo and a colleague set up the charity Flag DV, which helps domestic abuse victims access free legal advice. Jo led Flag DV for 10 years before leaving to devote her time to TTPNetwork.

Catherine Howell OBE, a retired chief nurse who was involved in Jo’s care when she was in hospital in the 1990s, is a Trustee for TTPNetwork.

Catherine said: “What Jo has done with the TTPNetwork goes beyond just supporting patients. She's been an absolute advocate for educating healthcare professionals. Jo knows more about the disease than lots of healthcare professionals, because it's so rare. She's also been instrumental in influencing policy around treatment, and that was acknowledged in 2010 when she won the Percy Lane Oliver Award.

“Jo has built relationships with patients, clinicians and the commercial sector. She’s applied a real multi-disciplinary approach – and it’s hard for a civilian to navigate the health system and its politics. The network has also educated patients and carers around this illness. It's just fantastic that patients have been so involved and informed.”

One such patient, Sophie Meredith, was diagnosed with immune-mediated TTP following the birth of her son, two and a half years ago.

Sophie said: “It's a really isolating condition to live with. The chances of you meeting somebody else who's got the condition are pretty much zero without somewhere like the TTPNetwork. Jo was the first person I ever spoke to who also had TTP. To have somebody running a charity who has lived with this condition for as long as she has, and navigate life as well as she does, provides a sense of hope for all of us.

“The TTPNetwork has been life-changing. If I'm being completely honest, I don't know how I would have navigated those first couple of weeks and months without having the TTPNetwork there. Jo is just an amazing person.”

Find out more about the charity at: www.ttpnetwork.org.

‍